Tips

Tongue Reduction Surgery – Some things to take with you:

dark tops and some muslins as there will be lots of blood and drooling

cool loose clothes for you – you may end up sleeping in them, and slippers

cool, easy to put on clothes and slippers for child

some toys & books for child – nothing with sharp or pointed parts

pots of instant custard and jelly, bananas for mashing, etc or any soft food you know your child loves (the mashed potato and gravy provided by the hospital did not go down well!)

soft feeding spoons and bowls, lots of bibs, tissues

drinking cups with easy pour spouts not the valve type

a buggy if your child still uses one – useful for going for spins around the hospital as a distraction when they are upset

Ultrasound scans/Clinic visits

These became increasingly difficult once toddlerhood hit!. We found that by playing the “lets scan your tummy” and the “lets be a doctor and take some blood” games, he knew more what to expect and was happier. We also asked to have one particular doctor, who was really good with our child and also very quick, to do the scan and to use the children’s room with the video in. By explaining to the ultrasound department that our son had got very hysterical on previous occasions they were really happy to try and help. But we had to ask! Apparently it is also OK to give your child one of the boiled sweet type lollypops if things get desperate – it doesn’t affect the scan.

We also left the blood tests in clinic until last so that we could go straight home rather than taking a very upset child in to see the consultant. Collecting urine samples at home (with the use of a urine bag if necessary) also reduced the stress and anxiety at clinic.

Constipation

Many children with BWS will suffer from constipation due to their weak abdominal muscles. If not treated this can result in problems such as megarectum and megacolon. This means that a large volume of stool is required to produce the sensation of needing to open the bowels. When the child does go it is usually very painful and can result in tearing and bleeding. This may in turn cause the child to withhold their stools to avoid pain, making the constipation worse.

It is very important that children with chronic constipation are assessed and treated appropriately. The comment “it will get better as they get older” is seldom true. If not managed effectively the problem will probably get worse. Children with constipation may have a poor appetite, a lack of energy and be irritable and angry. Their stools are often very large, foul smelling and irregular. There may also be soiling in potty-trained children due to overflow of fluid round the loaded rectum.

It may be helpful for parents to request that their child is assessed and treated by specialist paediatric gastroenterology clinics. Many hospitals even have childhood constipation clinics where the children are followed up regularly. If the problem has been going on for a long time it may well take a long time to resolve.

Treatment will initially involve softening and evacuation of the retained stools, and maintenance therapy using laxatives and more gentle stimulants.

Some of the drugs used include lactulose,docusate, picosulphate and senna.

It is obviously important that you try and give your child a high-fibre diet with adequate fluid intake. Excessive milk intake should be avoided as this can cause constipation in toddlers.

Use of “star charts” for older children can be very useful and encouraging them to sit on the toilet regularly for short periods. Also keep a record yourself of their bowel movements – such as frequency, size, consistency etc. This can be very helpful in assessing the problem and monitoring the treatment.

When a child has chronic constipation it can severely affect the quality of life of the child and the rest of the family. Ask for help from professionals as soon as possible and keep asking until you get it.

A very useful booklet about the management of childhood constipation can be obtained from: